Hypersomnia Foundation

Dr. Trotti Answers Questions on Diagnostics Relating to Hypersomnia

Dr. Lynn Marie Trotti answers questions about diagnostics relating to hypersomnia and concludes…

Q – What is the “gold-standard” for diagnosis of narcolepsy?  What about IH?

A – For narcolepsy type 1 (or narcolepsy with cataplexy), measurement of hypocretin levels in cerebrospinal fluid is the most specific, most definitive diagnostic test available.  It is a true “gold-standard” in that it measures the problem that is causing the symptoms (that is, patients with narcolepsy type 1 have symptoms because their brain can no longer produce hypocretin).  However, this requires a lumbar puncture, and not all sleep physicians perform this procedure.  Furthermore, clinical testing of hypocretin levels is not commercially available.  In contrast, the multiple sleep latency test (MSLT) is a widely available test.  Over time, MSLT diagnostic cut-offs have been changed to improve the ability of the MSLT to correctly diagnose cases of narcolepsy with cataplexy, and so this is the most widely used test for narcolepsy.  

Although diagnostic criteria for narcolepsy without cataplexy require a multiple sleep latency test and diagnostic criteria for IH can include results from a multiple sleep latency test, research suggests that the MSLT may not be ideal for diagnosing these conditions.  However, an optimal diagnostic test to replace the MSLT has not yet been developed and validated.

Q – Why is an 8-minute cut-off of mean sleep latency used for diagnosing Idiopathic Hypersomnia on the MSLT?

A – The use of an 8-minute sleep latency was an consensus decision made by the authors of the American Academy of Sleep Medicine’s International Classification of Sleep Disorders (ICSD).  In the 2001 revision to the original ICSD, a mean sleep latency less than 10 minutes was reported as typically present in patients with IH but was not a mandatory part of the diagnosis.  

However, by the time of the 2005 publication of the second edition (ICSD-2), this had been shortened to 8 minutes (and the 8 minute cut-off remains as one potential diagnostic criteria for IH in the current ICSD-3).  The authors of the ICSD-2 decided to use an 8 minute cutoff “to define sleepiness for diagnostic purposes” based on the fact that this cutoff appeared to be the best cutoff for diagnosing narcolepsy.  The underlying assumption they made was that an 8 minute cutoff should work well for IH diagnosis if it worked well for narcolepsy diagnosis.  

At the same time, however, they cited data that the average mean sleep latency in IH patients was 6.2 minutes, with a standard deviation of 3.0 minutes.  This implies that NOT all patients with IH have a mean sleep latency less than 8 minutes.  The apparent discrepancy between these two ideas was not explicitly addressed in the ICSD-2, although the authors did state in the text accompanying the diagnostic criteria that the mean sleep latency is “usually” less than 8 minutes in IH, and that sometimes additional diagnostic testing would be needed.  

This became more explicit in the ICSD-3, which now allows documentation of long sleep times to establish a diagnosis of IH in patients with a mean sleep latency > 8 minutes.  Whether the revised criteria are fully optimized for the diagnosis of IH remains to be determined.

Posted in: Hypersomnia, SomnusNooze

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BeyondSleepy in Boston 2017 a Success!

Saturday’s social gatherings kicked off with the Old Town Trolley Ride and ended the day with a casual Meet and Greet.  “This is the first time in my life I have ever met anyone else with hypersomnia let alone be able to sit and talk to them and share stories.  This has truly been life changing for me,” said one attendee.

 

Sunday’s HF Conference (#HFconf) welcomed all attendees and livestream viewers, both national and international.  The “Advocacy and Empowerment” theme presented through each speaker, addressed the various challenges for people with hypersomnia. One comment post-conference comment, “Thank you for your hard work.  I spent (many years) hiding my condition from the world and friends.  It was so difficult pretending.  Now I don’t have to.”

Our June 4th “Advocacy and Empowerment” conference video (unedited) is now available for a limited time on our YouTube channel, in 2 parts. #beyondsleepy #HFconf

https://m.youtube.com/channel/UCQyK93W4lilnzyVKeadzoug

 

We are sincerely grateful to our 2017 Boston conference sponsors.  Thanks to their support we were able, once again, to livestream as well as professionally record audio/video of this conference.  On behalf of the entire hypersomnia community we wish to thank Balance Therapeutics, Pavilion Compounding Pharmacy, Village Pharmacy of Lynnfield, and E. Matthew Steinberg, AIF – Oppenheimer.  

Posted in: Conference, Hypersomnia, SomnusNooze

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Research is Critical and Ongoing

YOU COUNT!

Time to update CoRDS information!

Please make time to log into the CoRDS online portal and keep all of your information up to date. Not only is it important to keep your information up to date in case researchers would like CoRDS to contact you, but it also helps potential researchers monitor the progression of rare diseases and rare disorders.

Every bit of information you can share, and keep updated, helps the rare community move one step toward solving the puzzle both now and in the future.

Visit http://www.sanfordresearch.org/cords/ and click “Update Your Registry” on the left side of the page.

Read the full annual update reminder here: CoRDS Annual Update Reminder

Posted in: CoRDS Registry, Research, SomnusNooze

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Dr. Lynn Marie Trotti Presents at AAN Annual Meeting

AAN is the American Academy of Neurology and the meeting was held in Boston, MA, April 22-28, 2017. The AAN Annual Meeting is the world’s largest gathering of neurologists, bringing together more than 10,000 neurology professionals across the globe, to network, discuss cutting-edge research, and take part in top-rated education programming across a wide variety of topics.

 

Dr. Lynn Marie Trotti gave two talks related to hypersomnia at the AAN meeting:

Narcolepsy and Hypersomnia Cases for the General Neurologist”, in a session called “Approaching the Management of Common Sleep Disorders: Case-based Review for the Non-sleep Specialist”

“Stuck in the MSLT: Challenges in Diagnosing and Treating the Other Central Disorders of Hypersomnolence”, “Sleep for the Practicing Neurologist I: Is it Narcolepsy or Something Else? Diagnostic and Management Challenges in the Central Disorders of Hypersomnolence”

 

Both are designed for neurologists who are not sleep specialists but who may encounter patients with hypersomnia.

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Caring for Your Dental Health

Caring for Your Dental Health

Did you know? Some stimulants can have dental side effects.

by Sheri Katz, D.D.S., Diplomate, American Board of Dental Sleep Medicine

Stimulants are often prescribed for the treatment of hypersomnia because they act to target the nervous system to increase wakefulness. This includes medications such as Adderall, Vyvance and Ritalin.

Most people are aware that stimulants can have various side effects but may not be familiar with dental side effects.

People taking stimulants may notice bruxism (teeth grinding and clenching) and a decrease in saliva, resulting in dry mouth (called xerostomia). These side effects do not affect everyone, but for those who find them bothersome, there are ways to manage these problems.

First, an explanation of how saliva is produced and why it’s important to dental health: saliva is a fluid secreted by four pairs of glands located between the ear and jaw, under the tongue and under the jaw. It serves several vital functions:

1. Saliva contains enzymes that function in the initial stages of digestion.

2. Saliva contains minerals that neutralize the acids produced by bacteria in dental plaque. These minerals also help to repair early tooth damage.

3. Saliva keeps your mouth moist and comfortable. It also aids in the process of tasting and swallowing and washes food off the teeth after eating.

A person with dry mouth produces less saliva and may notice an increase in temperature and sweet sensitivity. Dry mouth may also cause an increased accumulation of plaque, white spots on tooth enamel (demineralization) and an increase in tooth decay. People with dry mouth may also experience dry lips, inflammation and crusting at the corners of the mouth, unspecific gum irritations, and a painful or burning mouth. Additionally, there may be complaints of halitosis (bad breath) and an altered sense of taste.

Dry mouth (xerostomia) may be managed in the following ways:

1. Using artificial saliva products (such as sprays) which can help moisten the tissues and lessen the discomfort of dry mouth (these do not require a prescription and may be found on drugstore shelves)

2. Chewing sugar free gum or sucking on sugar free hard candy, which can increase salivary flow

3. Applying fluoride regularly through your dentist or by prescription which will protect the teeth by:

● strengthening the enamel and making teeth more impervious to acid

● keeping bacteria from multiplying

● decreasing the ability of the bacteria to adhere to teeth

4. Stopping smoking and all tobacco use

5. Limiting caffeine

6. Avoiding use of mouthwashes that contain alcohol

7. adding humidification at night

8. Making sure you are breathing through your nose and not your mouth, if at all possible

9. Speaking with your prescribing physician about changing dosages or exploring other medications that do not have dry mouth as a side-effect

Clenching and/or grinding the teeth, usually at night (Bruxism)

The causes of this disorder vary and are often unknown, but there are links between bruxism and smoking, alcohol, caffeine, illicit drug use and many prescribed medications, including stimulants.

Mild bruxism may require no treatment, but if severe, can cause headaches, jaw pain (pain in the temporomandibular joint, a condition also known as TMJ) and damage to the teeth and dental restorations.

Treatment for clenching and grinding may include:

1. Getting counseling on relaxation

2. Making lifestyle changes (quitting smoking, alcohol)

3. Using mouthguards (occlusal splints), made by the dentist and worn at night to protect the teeth and remove pressure from the joint

4. Asking your dentist about orthodontia and bite adjustments — these have been used to treat bruxism; however they are irreversible, and there is no high quality evidence to support these techniques

5. Again, speaking about the dosage and type of medication with your doctor; together you can decide if the effects of the medication outweigh the discomfort of the side effects

Sources:

1. Plemons JM, Al-Hashimi I, Marek CL; Managing dry mouth and salivary gland hypofunction. Executive summary of a report American Dental Association Council on Scientific Affairs..

J Am Dent Assoc. 2014 Aug;145(8):867-73. doi: 10.14219/jada.2014.44.

2. Sessle, Lavigne, et.al, Orofacial Pain:2 nd ed.,214-215.

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Monica Gow of Wake Up Narcolepsy joins HF’s Regional Conference

The Hypersomnia Foundation is pleased to announce that Monica Gow, co-founder and former executive director of Wake Up Narcolepsy is joining the list of presenters at HF’s Regional Conference in Boston on June 4th.

Monica Gow is a co-founder and former executive director of Wake Up Narcolepsy (WUN).  In 2008, when her son, Thomas, was diagnosed with narcolepsy, Monica and her husband, David, co-founded WUN to increase narcolepsy awareness, education and accelerate research.  In October 2016, Monica moved from the role of executive director to a member of the WUN Board of Directors.   Under Monica’s leadership, WUN quickly moved from a local nonprofit organization to a recognized national and international organization offering a trusted resource for physicians, people with narcolepsy, their families and other agencies in the sleep space.  She has been the WUN Boston Marathon team captain for eight years and personally completed the Boston Marathon four times for Wake Up Narcolepsy, exceeding her fundraising goal each time.  She has two other children, Caroline and Joe, who have been involved with the organization since inception.  Prior to serving the narcolepsy community, Monica gained ten years of work experience in the insurance field in companies such as The Paul Revere Insurance Companies and Tufts Associated Health Plan, and is a certified elementary teacher.  Monica’s mission will always be to improve the lives of people living with narcolepsy.

The title of Monica’s talk: The Importance of Participating In a Registry

Speakers already scheduled include Dr. Lynn Marie Trotti of Emory University and Georgia disability attorney Anjel Burgess. Dr. Trotti will provide a clinical update on the field of IH, and the CoRDS patient registry. Ms. Burgess will discuss how workers with IH should prepare to “Stay Ahead of IH” on the job. In addition, HF Board Member Celia King will moderate a discussion on managing IH at college featuring Mary King, EdD, and two college students, Olivia G. Robbins and Jessamine Griewahn-Okita. Kate Kaplan, PhD of Stanford University will review ways that therapy can help individuals with hypersomnia manage symptoms and lead active, full lives.

The conference takes place in Boston on Sunday, June 4th in the Johnson Building of the Boston Public Library, Rabb Lecture Hall, from 12:30 – 4:30 p.m. Optional social event planned for Saturday June 3rd include a trolley tour of the city (tickets $25) and a casual “meet and greet” evening.

The conference is free, and can also be viewed via livestream.

For more information, and to register for the conference or the livestream: http://www.hypersomniafoundation.org/2017hfrc/

For tickets to the sight-seeing trolley tour on June 3rd: Get Tickets Now

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Dr. Kate Kaplan of Stanford joins HF’s Regional Conference

The Hypersomnia Foundation is pleased to announce that Dr. Kate Kaplan, a clinical psychologist and sleep researcher at Stanford University is joining the list of presenters at HF’s Regional Conference in Boston on June 4th.

Dr. Kaplan will review ways that therapy can help individuals with hypersomnia manage symptoms and lead active, full lives. Dr. Kaplan practices behavioral sleep medicine and works frequently with individuals who have hypersomnia.

Dr. Kaplan is on the clinical faculty in the Psychiatry Department at Stanford University. Dr. Kaplan received her B.A. and M.A. from Stanford University and completed a Ph.D. at the University of California Berkeley, where she focused on hypersomnia co-occurring with psychiatric disorders. Dr. Kaplan returned to Stanford for clinical and research fellowships with an emphasis on sleep and sleep disorders. She has published in areas related to hypersomolence, sleep inertia and sleep treatments.

Speakers already scheduled include Dr. Lynn Marie Trotti of Emory University and Georgia disability attorney Anjel Burgess. Dr. Trotti will provide a clinical update on the field of IH, and the CoRDS patient registry. Ms. Burgess will discuss how workers with IH should prepare to “Stay Ahead of IH” on the job. In addition, HF Board Member Celia King will moderate a discussion on managing IH at college featuring Mary King, EdD, and two college students, Olivia G. Robbins and Jessamine Griewahn-Okita.

The conference takes place in Boston on Sunday, June 4th in the Johnson Building of the Boston Public Library, Rabb Lecture Hall, from 12:30 – 4:30 p.m. Optional social event planned for Saturday June 3rd include a trolley tour of the city (tickets $25) and a casual “meet and greet” evening.

The conference is free, and can also be viewed via livestream.

For more information, and to register for the conference or the livestream: http://www.hypersomniafoundation.org/2017hfrc/

For tickets to the sight-seeing trolley tour on June 3rd: Get Tickets Now

Posted in: Conference, HF Press Release

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Let Sleep Researchers Know What’s Important to YOU

HF urges the entire hypersomnia community, including people with IH, people with narcolepsy, all supporters and healthcare professionals, to take a short survey prepared by Project Sleep in partnership with the University of Arizona “to capture perspectives of the narcolepsy and hypersomnia community.”

Julie Flygare of Project Sleep notes, “…we hope it will be useful to help illustrate to the sleep researchers what PATIENTS’ research priorities are and how they may differ from their preconceived notions of what’s important – and hopefully spark some new collaborations between patient leaders and organizations and researchers.”

After we posted the link on our HF Facebook page, followers weighed in on the survey, commenting that it takes only about ten minutes to complete. Note that the deadline for completing the survey is May 17th.

To read more, and to take the survey:

http://project-sleep.com/narcolepsy-research-survey/

Posted in: narcolepsy, Research

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Dear Abby Misses the Mark on IH

A “Dear Abby” advice column was recently forwarded to us by Noelle, a member of the hypersomnia community. In a letter to Abby, a mother in New Jersey asked what to do about her teenaged son’s complete inability to get himself up for school in the morning. She said he is a responsible boy in every other way, but she fears he won’t be able to get to class when he starts college this fall. Unfortunately, Abby’s advice reflects the widespread lack of awareness of sleep disorders. But we viewed it as a golden opportunity to educate “Abby,” the public, and we hope, the mother of that young man.

The Hypersomnia Foundation, working with Dr. David Rye of Emory University, co-wrote and submitted a reply which we hope will be published. We have not yet heard back from the writers of “Dear Abby,” but we’ve decided to share the story here, in hopes that you will share it, too. (We did manage to get our letter posted on the Abby Facebook page.) Below is a link to the original letter, followed by our response. (Warning: Many readers will find the original letter and the Abby reply upsetting. We certainly did.) Our thanks to Noelle for bringing this to our attention.

The original column:

http://www.pressdemocrat.com/lifestyle/6726470-181/dear-abby-mom-cant-get

Dear Abby: Mom can’t get teen to wake up on his own
JEANNE PHILLIPS
DEAR ABBY | March 11, 2017

Dear Abby: My son “Jake” is headed to college in the fall, and I want his last year at home to be memorable and happy. He’s a good student and has been admitted to the college of his choice. The problem is, he can’t wake himself up in the morning. He switches off the alarm and goes back to sleep. I must go up to his room several times to wake him because he won’t get up the first time.

Jake is otherwise independent. He does his own laundry and keeps his room spotless. I’m spending a large part of my savings on his tuition, and I’m worried that unless he can wake himself in the mornings, he won’t get to classes on time.

I have tried talking to him about putting the alarm on “snooze” instead of turning it off, but nothing works. My husband suggests we pour a glass of cold water on Jake’s face 10 minutes after the alarm goes off. Can you help us solve this problem?

— Up Already in New Jersey

Dear Up: Although you may think your husband’s suggestion is harsh and inappropriate, it’s time you stopped coddling your son. The two of you need to sit him down and tell him that college is expensive, that if you and your husband are willing to go through the financial hardship of paying for it, he must wake up by himself and if he cannot manage to do that, he will have to pay for his own education. Perhaps that will get across to him that you are serious.

Our reply to “Abby”:

March 22, 2017

Dear Abby,

As soon as we read your reply to “Up Already in New Jersey,” we were compelled to respond. A mother wrote to you about her teenaged son, a good student and responsible young man, concerned that his inability to awaken in the morning would prevent him coping with the demands of college. You scolded her for coddling him, and didn’t disagree with her husband’s suggestion that she consider throwing cold water in her son’s face.

Abby, difficulty waking up may be a signal of serious medical conditions (e.g., low thyroid hormone levels, iron deficiency with or without anemia, and others). It may also be a symptom of certain poorly recognized primary sleep disorders. While adolescents have a natural propensity towards being “night owls,” long and unrefreshing sleep can be an indication of a more serious neurological disorder such as idiopathic hypersomnia or narcolepsy. The inability to awaken to a standard alarm is, for instance, one of the hallmark symptoms of idiopathic hypersomnia. Affected individuals will often resort to ‘sonic-boom’ alarms and other extraordinary means to awaken. Other symptoms may include disorientation after awakening, grogginess, ‘brain fog’ and an inability to remain alert during the day. That concerned mother would be well advised to seek the opinion of a board certified sleep medicine physician.

In a society where feeling tired is increasingly expected, and accepted, people with sleep disorders are often mistaken as unmotivated or lazy. It is truly heartbreaking how many people with a sleep disorder suffer for years before getting a proper diagnosis. If this mom’s teen has a medical or (un)recognized sleep disorder, throwing cold water in his face will not help. New Jersey mom’s son will need his parents’ guidance to sort out how to best evaluate and manage a condition that might affect his schooling, his work, and his relationships. New Jersey mom may also want to view online – free of charge – a discussion panel led by two students who have successfully navigated college with their diagnoses of idiopathic hypersomnia. It’s scheduled as a live webcast on June 4th, as part of the Hypersomnia Foundation’s conference in Boston, MA – anyone can go to www.hypersomniafoundation.org to register.

Sincerely,

Diane Powell, LCSW
CEO / Board Chair
The Hypersomnia Foundation

David B. Rye M.D., Ph.D.
Professor of Neurology, Emory University School of Medicine
Chair, Scientific Advisory Board Hypersomnia Foundation

Posted in: Awareness, Press Coverage

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HF Board Member featured as guest on Top Docs Radio!

Hypersomnia Foundation’s Catherine Page-Rye will be live on Top Docs Radio, Tuesday April 18 at noon EDT.

Cat aims to promote awareness and better understanding of idiopathic hypersomnia (IH) as a rarely diagnosed, often misunderstood, serious neurological sleep disorder. She will discuss various topics with the moderator including:

• Distinguishing between the terms idiopathic hypersomnia (IH) and hypersomnia
• Classifications of hypersomnia
• Symptoms of IH
• Diagnosis and treatments of IH
• Hypersomnia Foundation programs for awareness, education and research aligning with
their slogan “Let’s get #BeyondSleepy.”

Plan to tune in via the internet using the following link and on the top right click ”listen” (do not click “select a studio”):

http://topdocs.businessradiox.com/

The show will also be archived and accessible via the above link thereafter.

Posted in: Awareness, HF Press Release

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